Today they fed me noodle soup and white bread; I thought, if it has to be so unbalanced a meal, what, no chocolate?

Tomorrow maybe, maybe they’ll send me home.  I’m both ready and totally not.  They apparently put too much insulin in my TPN last night and have had troubles all day today with my blood sugar tanking, so we shall see.  I’m now off the TPN.

So I didn’t get any knitting done today. I slept a lot this afternoon, and I’m grateful for the astute nurse who, when I woke up, didn’t like the looks of me and tested that blood sugar. It’s up to normal now though.

Yesterday’s nurse was back again this morning, looking tired, whereas yesterday she had been totally chipper and brightened my day.  I had a two-skein scarf going for whoever it was going to turn out to be for, and it was quickly clearly for her. So that’s what I did today.

No pureed foods after all, meantime. I admitted to the surgical team that the clear liquids had hurt, so they had me stick with them for now (oh joy). Broth and this super-sweet lemon fizz stuff you could use for a glucose tolerance test, and sorry, Nancy, but I despise Jello.  I actually do eat a ritual half square’s worth when they bring it, trying to see if it’s any better this time.  It is not.

So having that yarn to retreat to helped.

But my abdomen was hurting and I kept knitting anyway–I wanted it finished by shift change.

And I managed it. I’ve been resting since I gave it to her, and I’m doing better.

The important thing is, she was thrilled. She was totally blown away. “Now I own a scarf!” as she wrapped it around her. I explained that if she rinsed it and laid it out flat it would come out about a third longer and flatter, but she was perfectly happy.   Thrilled.  “You didn’t have to do that!” (A little medical tape to wrap the yarn label in a circle around the scarf–I thought that was a nice touch.)

I have two more balls of that same yarn left.  Two days to knit a scarf out of it at hospital pace. We’ll see how I do.

The 25 staples come out ten days post-surgery.  I look very Frankensteined down there.

I had some yarn that I knew right where it was at home and I knew what size needle would go with it, and I asked Mom and Richard to bring them to see if I could at least try to knit again. Richard’s so funny; he didn’t know/remember about the circular needle sizer, so he simply scooped up my entire collection of circs in the pottery canister and brought them, figuring I’d know what’s what.

Paca de Seda baby alpaca/silk 91 yards/50 g (Purlescence has it); it’s pretty bulky for my usual.  But I wouldn’t have to wind any balls and it amazed me that I could do it, I actually have the strength now to hold that up and knit it. What a difference.  Yay!

The funny part, though, is that I have an oxygen meter glued to my left index finger, so I’ve had to type skipping that finger and knit keeping it and its wire out of the way; it makes for very slow going. But a second ball of yarn’s worth and I’ll have a simple lace scarf ready to give.

One of Dr. R’s GI colleagues came by today whom I hadn’t met before, and as he examined me he asked me what I do.  I told him I’m an author and a knitter, and he asked if I could show him my book. (Ya think?!) Then I told him to please read the very last paragraph on the very last page, that it referenced the previous huge Crohn’s flare I’d had–and that I’d gotten Dr. R’s permission to put his name in there.

The younger doctor was very pleased. It was a strong reminder as to why he went into medicine in the first place and I knew it.  Doctors need to be told every now and then how much the patients are glad that they do what they do.

My surgeon’s also a Dr. R.  I like that.

Tomorrow I get to eat pureed food; one step closer to going home.  it did hurt to drink today, but not much and so worth it. Forward march!

I have the perfect shade of green baby alpaca at home waiting to be knit up into a shawl for a particular nurse, where a scarf just won’t do. She needs a shawl from me.  She loved my book and she needs a permanent reminder from me that she can write her own book that she wants to about nursing cancer patients, even if it’ll take her a lot of time to do.  (She exclaimed over the amount of time I said it took me to knit a shawl, whereas I didn’t think it was much at all.)  She is the very kindest nurse you could ever ask for and I told her I very much wanted to read what she has to say.

A permanent wrap of encouragement, especially from someone who got her first book so far actually published, to say it can be done, I have faith in her–yeah.  Size 9s, here I come.  Soon.

To explain a moment, before my surgery I was in the oncology ward simply because that’s where there had been a bed available; I had been on a waiting list to get in at all at the time, Stanford being closed to new admissions. They were swamped.

Anyway.  You can see why that nurse needs me to knit that.  It will happen.

Friday in the OR, after the five or six people in the room finished their preparations, the anesthesiologist told me, if you want to say that prayer, now’s the time.  And so, with prior approval of his, the surgeon’s, and the OR nurse, I said a prayer right before they put me out: with my arms taped out to the sides, not my usual posture for such, I thanked God out loud for the expertise gathered on my behalf.  For their caring.  And I asked a blessing on their work and on all their loved ones.

And with that they began.

The surgeon has come by every day both before and after to check on me. She’s a peach.  She hopes to start me on liquids and maybe even food in the next day or two; right now it’s tube-only.

And maybe I already mentioned this (there’s a fair amount of brain fog going on around here) but the funny thing is, I who don’t even own a TV and haven’t watched it in 30 years–I’ve been watching the Food Network for days.  Just in awe.  And in happy anticipation of what I have to look forward to.  At last.

Well we are off, on the road to recovery.  She is trying hard to be good, and really likes that nice green pain button.  Everything is looking good, as the Drs. see it.  The surgeon say everything else looked healthy when she looked around.  Alison has been able to sit up and walk a short way.  She sat in a chair for twice as long as they required and has taken two very short walks.  Her BP is a bit low, even for her, so she hasn’t been pushed much.  The only excitement has been the O2 sensor that makes quite a racket if her breathing gets too shallow.  I put the laptop on her bed and she read all of the comments.

I am a bit to tired to try to be clever.  So just the facts, maam just the facts….

The surgeon considers the operation to be a success.  The colon is no more, and was really bad.  Technically things went better than expected.

Alison is in a lot of pain, and pushes the button every 10m for relief.  She was worried that it would run out, but think we got her to understand that 1)she can not OD on button pushes, and 2) They will keep it filled tonight.  They do not want her to be in pain at the moment.  I spent an hr in recovery kneeling at the side of the bed getting things done and holding her close.  She is bruised and battered, but hopefully will start to mend.

Alison is off lose her colon, the hopefully the sickness to. Not being as talented as her I can make it cleverly fit the tune.

So.  Last night at bedtime I offered up a prayer, wondering if this surgery really would totally cure my Crohn’s forever and I’d never have to worry about it again.  What I felt in response!  An overwhelming sense of love and compassion from Above and at the same time: that God laughed.  Offering to me such joy as He did so so as to make me want to laugh for joy too.  I don’t know what the future holds, but, if and when it comes–we’ll handle that one together too.

And all felt right in the world.

(Ed. to add: surgery at noon tomorrow is the plan.  Operating room times vary in real life, but, it’s tomorrow about then.)

What the Humira did for me was to stop the endless, intense nausea that had me on two meds for it and asking for more as a dose would wear off. It’s gone. That alone was worth the Humira yesterday.

What has been amazing to everybody all along is how very little pain I’ve been in, given the state of that colon.  They press on my abdomen, going, Does that hurt? And almost always the answer is no. (With me gleefully thinking, and I know whyyyyy…. Prayers.  All those prayers.) Every now and then a twinge, but given what’s going on!  One doctor even told us that it is noted in my chart, “Patient looks deceptively well” as a warning to the team not to dismiss the seriousness of it all.

After a discussion with various doctors and my Dr. R in particular today, the decision is made. Surgery. I can’t wait. The thing will have an end.  Since I have never had any sign of any Crohn’s anywhere else, I won’t have to be on immunosuppressants anymore.  Dr. R feels it will essentially cure me.

And THAT is a miracle!

(Ed. to clarify: my particular Crohn’s has always been caused by LE cells from my lupus. I’m not a typical case. Those LE cells never showed up anywhere else that Crohn’s might.)

Wow you guys. And thank you.

When four folks from the surgery team showed up to introduce themselves last night and first assured us they were not a barbershop quartet, they had us laughing a good one.

Thinking about yesterday’s post later, after Mom and Richard had left for the evening, that word “desperately” I’d written was emotionally exactly right.  And yet.  As all your prayers poured in on my behalf, the idea of the surgery became much more–I guess what I’m saying is, I let go of the fear. I hadn’t known it was there. I let it just go.  I realized that I’d been trying to tell God what outcome I wanted.

Just as I finished typing the above, by the serendipity of the grace of God, both the surgeon who would be doing the operation if they do and the female gastroenterologist on duty showed up within a minute of each other, to their surprise, so we all got to consult together.  I just got my Humira; everybody’s willing to give it a few days to see how it does.

And get this: the female surgeon bought a qiviut cowl at Oomingmak in Alaska! How cool is that!

I told them what I really really want is to still get to go to Stitches West one month from now for at least a little time. I know I can’t expect much, but I’ll get a little.

They oohed and aahed over my book, called me a celebrity and made me laugh, and we had a lovely visit after the strictly medical stuff.  And I am hugely buoyed up.

And life is good.

I needed two miracles, one small, one big. I got the first one this morning, for which I am infinitely grateful: I was first on the list and got a PCC line (“pick”) nurse installing my PCC line first thing this morning. This means that for the first time in a month, via tube now, I can get full and complete nutrition and my body can recover that way.

The second is much dicier. Tomorrow is the day, after the requisite two week interval, for my second Humira dose. It will be two epipens’ worth; the first dose was four epipens, next those two tomorrow, then I am to have one every other week after that forevermore.

I desperately need tomorrow’s dose to work.  Really work. If it does not, I have to have my colon out and will have a long hard recovery from that, and once you cut into a Crohn’s patient, there are many more surgeries later over the years.

If that Humira takes, I can avoid all of that and be home free.

I was thinking about taking a shower this morning when the housekeeper came in to collect trash, scrub the sink etc and mop the floor. I watched her quietly, and as she mopped near the bed I told her thank you.  I added a moment later that I would love to be able mop floors again soon too, and she was making it safer for me so I could get healthier.

She mopped extra and with great care and a smile after that.  Her work is as important in its way as everybody else’s here, and I knew it must be meaningful to her for that. Having someone acknowledge that out loud and thank her–it was what I could offer her.

When we acknowledge the importance of what someone does for us, however mundane a thing it may be, we acknowledge the inherent service and kindness behind it.  I say this with a sense of wonder at the love I felt bloom in the room. I was not helpless no matter my condition, nor being helped; service is far greater than that.  Rather, we were equals on every level before God in that moment.

A new doctor came by and basically said, wow, you look a lot better than I would have expected after seeing your labwork.  But she said I ought to meet the surgeons sooner rather than later; there’s still a possibility of losing the colon and she didn’t want it to be under emergency circumstances.

I mentioned the second Humira dose (two epipens’ worth for the second dose) is to be Tuesday, and we all hoped.

I have a team of gastroenterologists working on me, and I’ve been impressed at how very careful and thorough they are.

And a few minutes ago Mom and Richard and I were taking a very short walk outside my room when I exclaimed, “BRIAN!!! I’d recognize the back of that head anywhere!”

Brian turned around, surprised, and my favorite old nurse from six years ago and I threw our arms around each other.  SO good to see him. Although I prefered doing so, say, after the last time I ever knit a pair of socks: they were for him.  As a thank you for being willing to walk in his patients’ shoes.

He’s a good one.

The initial test results are in, and you may not believe it, but the doctor said her colon looked “Moth eaten.”  This is not good as apparently she has lots of ulcers about the size of a cigarette burn all over her colon.  This is significantly worse than the pictures they showed me 3 weeks ago.

The docs have a theory to explain why she is as bad off as she is, and if the tests are positive for what they suspect, it should be treatable.  It would be a good outcome, as it would explain several things, although the long term ramifications are not completely clear for me at this point.

Alison has been bad, or more correctly her body is not cooperating. So she is now in the hospital for fluids, PPN/TPN, and tests. She was unable to eat or drink anything without paying too high a price. She is still reading comments, but is one sick lady.